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Doctors search for answer for incurable autoimmune disease

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#1 janey


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Posted 26 October 2010 - 04:02 AM

Doctors search for answer for incurable autoimmune disease.

Experts say scleroderma may be caused by a combination of two distinct elements. Environmental factors, and the wiring of one's own immune system play roles, but the question is, how. Doctor Mayes and the UT Health Science Center at Houston still need more gene samples for their study. Maureen McFadden. WNDU.com. 10/12/10. (Also see: Causes of Scleroderma)

[/i]This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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#2 Jeannie McClelland

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Posted 26 October 2010 - 04:46 AM

Janey, this is a great article and highlights a chance for all of us with scleroderma to do something to help researchers get further along the way to a cure.

I donated blood to Dr. Mayes study and also got 4 other people (friends and family) to donate as healthy controls. It cost me nothing but a couple of emails - I contacted Dr. Mayes study coordinator, she telephoned me and arranged for all the paperwork and sample kits to be sent. I asked my general practitioner if someone in his practice could draw the blood for free (explaining about the study and the kits), which he was happy to arrange. Then I dropped the pre-paid postage boxes in the mail and hey, presto! I had done something to maybe help cure scleroderma!

Here are the contact details for Dr. Mayes:

Maureen Mayes, MD, MPH
Professor of Internal Medicine
University of Texas - Houston Health Science Center
Phone: (713) 500-6905
E-mail: [email protected]
Jeannie McClelland
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#3 Shelley Ensz

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Posted 26 October 2010 - 07:22 AM

Thanks Janey and Jeannie!

I'd just like to point out to others that we also have more information on this, on our main site. It is the

Scleroderma Family Registry and DNA Repository
And here is the enrollment information for the DNA repository (which is led by Dr. Mayes, exactly as Jeannie said, but managed by Marilyn Perry). To enroll, contact: Marilyn Perry
Coordinator of the Scleroderma Family Registry
University of Texas Health Science Center at Houston
6431 Fannin Street
MSB 5.270
Houston, TX 77030

Toll Free: 1-800-736-6864
Local: 713-500-7196
Email: [email protected]

Enrollment is a wonderful way to help scleroderma research move forward. So if you join up as a result of this email, will you please let us know, because it will also inspire others to help!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.